Noah is doing incredibly well—all things considered. He is getting stronger and smiling more often that it just makes me swoon. It is definitely alot of work because he has so many needs, so many people on his care team and sadly a mom who is really not good at juggling more than a few things at a time! I’m still trying to stay on track with the basics like feedings, laundry, dishes, and my oldest daughter’s school things. (Meadow is supposed to start kindergarten this year, but I haven’t had time to look for one and enroll her yet!).
One might say I’m a bit of a hot mess. I’m always busy but I don’t think I’m very smart with my time. So I get a lot done but not a lot done. I’m simply doing a lot of cleaning everyday. Haha but I am thankful my milk supply is still going strong. This is the first time where I am feeding my baby exclusively breast milk as I pump it out every 3-4 hours. It’s exhausting and my boobs have taken a beating, but if it will save us money and be the best for Noah then I am still going to keep doing it until I can’t.
Okay, now for the honesty.
So, having a child with Down syndrome and hearing loss is scary because I’m not sure if I’m getting him all the help he needs to develop optimally. I wish I had a planner or secretary who wold just tell me where I need to go and when…but I am my own planner and secretary and I suck at the job. It’s a lot to ingest. There are a lot of acronyms for all the different organizations such as EIP, DSA, IEP, DHH, and then there’s sources that are connected like regional center and sunny days and others that are not like John Tracy? I feel overwhelmed to say the least and guilty because I don’t have the time to understand all of them.
So, I’m just sort of taking things dry nice and slow. One thing at a time. So, Noah is doing physical therapy 1x a week and he will be getting his hearing aid soon so I plan to find him a deaf coach so we can learn some sign language together.
After that I have no clue. I will take it as it all happens.
Then I have my two other kids to think about (my 2 year old son possibly starting preschool soon and my 4 year old daughter who will be starting Kindergarten soon.)
And then I have my ministry at church to think about and how God wants to use me to help just one more soul enter into relationship with Him.
And then there’s marriage and all the crazy wrenches that get thrown into that wheel of a ride!
Then there’s my post baby body that I would like to see bounce back, but I’m not ready to give up cookies and brownies nor do I have the time to go to the gym. Haha.
I am in need of God’s help to guide my life so that I can help guide my kids to Him too.
